Temodar Side Effects Oligodendroglioma II

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Temodar Side Effects Oligodendroglioma II

by trabs00 on Sat Jan 19, 2019 12:17 AM

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Hi all,

first time poster. 40 year old male, otherwise healthy, seizure was first symptom of my brain cancer.

Diagnosed on 10Dec18 with Stage 2 Olidgodendroglioma (with mutations) 5 x 5 x 5 cm tumor (right frontal lobe). Surgery 11Dec18 ~80% removal, only very minor motor issues with left hand after resection. I consider myselft lucky, recovery from craniotomy going well. I have followup MRI on 15Feb19 and will finalize treament plan then.

I have decided against Radiation for now (concern about neurological side effects) and likely will do Temodar/Temozolomide as some treatment.

For those that have had similar dignosis and had treatment with Temodar, how bad are the side effects? I am hoping to be able to work during the chemo but not sure what to expect. Any tips on help with symptom managment? 

Best of luck to all of you who are also battling Cancer, I'm optimistic, have  a lot of support and am not going down without a fight! 

Thanks for any help!

RE: Temodar Side Effects Oligodendroglioma II

by Miles22 on Mon Jan 21, 2019 02:11 PM

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Trabs

The 2 things you are saying about yourself are the only way I believe in beating cancer. Optomistic approach to win the battle and continuing to live a healthy life with great diet changes and consistent excercise.

I am a stage IV gliosarcoma survivor who went down all the paths recommended after resection with 6 weeks of radiation and temodar followed with the 5 days high dosages of temodar and 23 days off.

15 months ago I made decisions about how to extend my life without chemotherapy as the constant two weeks of becoming lethargic and sick while taking the high dosage then working back to feeling better to get to start the process all over again. To truthfully answer your question the side effects were doable with temodar especially the first 6 weeks doing it daily, going to the 5 day monthly pattern showed me how great I started to feel before the next 5 day schedule. This didn't fit my life trying as at times it took all I had to bring  the needed energy to coach and build my collegiate baseball team.

Now that I changed my path to live better (and I truly believe longer) I keep to a strict ketogenic diet as to not feed cancer, workout a minimum of 4 times a week, continue a naturopath schedule of boswella serratta, tumeric, ginger, Omega 3, two mushrooms that I can't pronounce but go by names on the bottles of Lions Mane and Turket tail and melatonin.

Only days I have missed work after surgery were the day trips to travel the 5 hours to get my MRI and Oncologist appointments every 2 months. So being younger than me, positive and physically in shape I would think you could handle a work schedule well.

Best to you and win the fight. Take care

RE: Temodar Side Effects Oligodendroglioma II

by Sleepykit on Mon Jan 21, 2019 08:40 PM

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Hello Trabs, 

so sorry you have to go through this. 

My tumor was diagnosed 10 years ago at age 43. Initialy oligoastrocytoma II°, it was huge and located in the rt. temporal lobe, so i had a partial resektion followed by high dose Temodar ( 200mg/ m2) for 12 months. I too opted not to go for radiation, saving it for a later stage . 

3 months after surgery i went back part time to work, despite Temodar. My main side effects were nausea and fatigue. 

Following, i had a couple of scares with minimal growths, but had no further treatment till end of 2017 ( 9 yrs after initial Diagnosis and after my tumor was reclassified as Oligo II°) . I then had radiation and PC- chemotherapy till Sept. 2018 because of the new results related to progress free years. 

Today i am at 10 yrs post- diagnosis , work full time and am very active at 53 yrs. You probably know that you have a very chemo and radiation sensitive tumor! 

All the best, and keep posting

Kit

RE: Temodar Side Effects Oligodendroglioma II

by trabs00 on Tue Jan 22, 2019 03:55 PM

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On Jan 21, 2019 8:40 PM Sleepykit wrote:

Hello Trabs, 

so sorry you have to go through this. 

My tumor was diagnosed 10 years ago at age 43. Initialy oligoastrocytoma II°, it was huge and located in the rt. temporal lobe, so i had a partial resektion followed by high dose Temodar ( 200mg/ m2) for 12 months. I too opted not to go for radiation, saving it for a later stage . 

3 months after surgery i went back part time to work, despite Temodar. My main side effects were nausea and fatigue. 

Following, i had a couple of scares with minimal growths, but had no further treatment till end of 2017 ( 9 yrs after initial Diagnosis and after my tumor was reclassified as Oligo II°) . I then had radiation and PC- chemotherapy till Sept. 2018 because of the new results related to progress free years. 

Today i am at 10 yrs post- diagnosis , work full time and am very active at 53 yrs. You probably know that you have a very chemo and radiation sensitive tumor! 

All the best, and keep posting

Kit

Thanks for sharing your story, ours sounds very similar. where are you located? I am in the Bay area, so lucky to have UCSF which has great neuro surgery and oncology. 

I am about to go back to work ~5 weeks after the craniotomy (which seems crazy I am healed enough when you know what it is that they did). I likely will start Temodar in about 6 weeks or so (I ams starting a new job and want to settle in for a month before starting the chemo). I am optimistic based on feedback from forums that I will be able to manage the Temodar side effects. 

fingers crossed I have 9-10 years before stepping up to radiation and another surgery

Good luck with your fight, I know I am not going down easily

Fu@K Cancer!

RE: Temodar Side Effects Oligodendroglioma II

by jlcrayner on Tue Feb 26, 2019 05:47 PM

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Thanks for sharing your story as well! I am a 52 yo female and I was recently diagnosed with a Grade II Astrocytoma (still waiting on final marker indicator of Oligodendroglioma) - had an awake-based surgery on Jan 28th, 2019.  They were able to remove 95% of tumor and my NO wants to proceed with proton radiation and chemo (Temodar).  I was more nervous about taking the chemo pill than the radiation (proton radiation seems better than regular radiation....more directed and fewer side effects) and am doing research on long term effects of Temodar currently.  I still have strength in my left hand - which is great - and no other symptoms. I am also taking a nightly 4 oz dose of Essiac Tea (organic).  Any thoughts or advice or experiences is greatly appreciated and I wish you all the best - sending positive energy your way!

RE: Temodar Side Effects Oligodendroglioma II

by fighter2019 on Thu Mar 07, 2019 04:11 AM

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Hi all,

first time poster. 44 yrs old female. Had craniotomay done in 2013, was 37 yrs old. 92% removed, oligo 2. wait and watch approach. Again saw progression in 2018. NO suggested to have radioation and chemo. finished radiation. MRI showed inhibitions in growth area. Started chemo tamedor on Feb19. after that started having focal and partial seizures. MRI showed white spot. as per doctor its necrosis of radiation. Radiation went well. Last weeks after radiation was tiring. Let go from work due to some previos health problems.  

    After I started on chemo, convulsions started happening. Ended up increased dosage of Keppra and new medicine vimpat. Need to checmo for 5 more months. 5 days ina month. and 23 days off. so far doing okay except heart racing and anxiety conditions. They are adding more pills. Moved from UCSF to Stanford for convenience. But prefer UCSF. I have not done any other diest changes as I followed good diet.

What other remedies have you done to kill your brain cancer cells and to be in control so that i can live for 20 more years. See kids finish schools.

Thanks for any help.

RE: Temodar Side Effects Oligodendroglioma II

by ottoh on Thu Mar 07, 2019 04:52 PM

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On Mar 07, 2019 4:11 AM fighter2019 wrote:

Hi all,

first time poster. 44 yrs old female. Had craniotomay done in 2013, was 37 yrs old. 92% removed, oligo 2. wait and watch approach. Again saw progression in 2018. NO suggested to have radioation and chemo. finished radiation. MRI showed inhibitions in growth area. Started chemo tamedor on Feb19. after that started having focal and partial seizures. MRI showed white spot. as per doctor its necrosis of radiation. Radiation went well. Last weeks after radiation was tiring. Let go from work due to some previos health problems.  

    After I started on chemo, convulsions started happening. Ended up increased dosage of Keppra and new medicine vimpat. Need to checmo for 5 more months. 5 days ina month. and 23 days off. so far doing okay except heart racing and anxiety conditions. They are adding more pills. Moved from UCSF to Stanford for convenience. But prefer UCSF. I have not done any other diest changes as I followed good diet.

What other remedies have you done to kill your brain cancer cells and to be in control so that i can live for 20 more years. See kids finish schools.

Thanks for any help.

Hi Fighter, the wife had glioblastoma and was on Keppra and Dex. We weened her of both while she was going through her clinical trial with CBD and THC oils. They helped with convulstions, nausea, sleeping and appitite. I also believe they help retard the growth of cancer. She just had another MRI and she is clean once again now for the last three years. Do some reading about the oils and make your own mind up, but I'm convinced they help and will keep her on them for ever. Good luck to you, keep up the fight  and aloha. 

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